47 Comments

I have caregiver burn out. No guilt, my self centered and demanding fil has become a member of my toxic list, he will always be a taker, he never shows empathy for anyone or their illnesses. He never accepts responsibility for his bad choices or mistakes. It,s always been other people's fault. I'm tired, stressed, overwhelmed and emotionally exhausted. I can't t do this anymore, his other son and dil. Can deal with him. I know this sounds harsh, but I am terminally ill and I need time with my husband, children and grandchildren. If I any guilt it's that I should have done this sooner. I won't do this to my children, my future is not long and already have my wishes taken care of.

My deepest condolences and sympathies on the passing of your dad. I'm so sorry. Its so hard being the sole caregiver to an elderly parent. We all have our limits. And the truth is we really didn't know things would happen so quickly.

I thought my dad was coming home too. But he was getting weaker and weaker. The doctor even told us he had 6 months to a year and that was shocking enough, but then he passed two days later. And I feel as so many of you, rack with guilt. Us women bear this burden more acutely.

I keep going back to the last year of my dad's life. He was getting grumpy. Refusing his meds, eating and drinking less and didn't care about showers. All he wanted to do was sleep. I was at my wits end. And none of my siblings stepped up. All the decisions were up to me. So I feel so extra guilty for letting my dad down. I should have found a better way. I should have found a way to keep him alive. Now I have to suffer the pain and grief of his passing.

I know everything is 20/20 in hindsight. And I should try to move forward the best I can. I continue to seek out counseling, support groups and to read as much as I can about grief. I need to understand, but I still struggle with the guilt.

I put conditions on my Dad coming home from rehab, or going to assisted living. He had to be able to transfer and clean himself on the toilet. I had been handling everything else, but he had to be able to do those two things. Every week we discussed him coming home, and he told me he was just about there. Dad got a UTI, and fell at the AL facility. It started a domino effect and we lost him in 4 short days. I am racked with guilt that I didn't just bring him home, and do what needed to be done. I am unable to sleep and find myself walking the neighborhood at all hours of the night.

I feel guilty because I'm discovering that I am wearing out and worry that I won't be able to keep up with this for much longer. I am the only child and sole caregiver, except for the aide I hire when I'm at work. There is resentment too, because my life is gone, and fear, because mom's care is going to bankrupt us. My income isn't great and I have no health insurance or pension plan, except eventually a pittance from social security. And I am afraid of seeing mom decline and nothing I can do to stop it.

In the last few months my mother has done less and less and less. She was never a person that was very outgoing even when she could get up and get around, preferring to talk to one or two friends on the phone and basically watch TV. I remember she has watch TV all of her life, but I still find it so frustrating that she won't go down and enjoy the people that are in her senior center but then complains that she's very lonely. I still work and though she lives about 15-20 minutes away, I simply will not go down there every day to be her social time. I do, however, need to do a better job of taking care of myself.

This is such a thought-provoking thread. If I feel guilt, it's because I'm not one of the Doormat Daughters that society seems to expect us to be. I had lunch last week with a group of women, one of whom hadn't been able to get together with us for months because of her mother. (Her 93 y/o mother cannot be left alone because she fell, was hospitalized and then in rehab.) Her mother will not have anyone come in, nor will she go to a facility. (A brother stays with the mother while my friend is at work. My friend was told by her sibs to move in with the mother when my friend's husband died over a decade ago, and she did so.)

My guilt comes in because I would not sacrifice myself like this (or like so many on this forum do). Maybe it's guilt that I can't let things go; can't accept that I'm the one who is supposed to be the main point person for my mother, all the while being unappreciated.

I must admit I have the same trouble many times with my situation. My wife's accident slowly chipped away at our relationship that we no longer are a "couple". I tried the best I could but found no way to prevent a change when the relationship was so dramatically different. I am here and never leaving out of compassion and empathy and will "soldier on". Sometimes I wonder if I suffer some form of PTS from her accident and going through being told I should "prepare myself" for her death or staying in a coma and the (6) month journey to get her back home. There is no one left and she would need to be placed in a skilled nursing facility if I left. I despise any person who could just leave knowing that and even the thought makes me feel incredibly guilty and ashamed. So I push forward the best I can with no real future plan or dreams when a guy my age should have many.I know the situations bad when I read posts about people trying to deal with aging parents and I see that as just a difficult period to go through and not a life sentence. I don't say that in disrespect or comparison because I know being a caregiver is an incredibly tough job no matter what you're dealing with. Just like the depth of the water makes no difference when it's over your head. I think it's just more a realization to me knowing this is not a temporary event in my life which will one day pass.

There are so many times when I actually hated my mom and I came to the decision and learned that you a love a person and not like them in early adolescence.

The guilt is part of the programming while they are doing things and treating us in a way that eventually leads to dislike and hate.

You know all I ever wanted to hear was thanks, I see how you are trying to help. But with narcissist its all about them. I felt like when I did good I was making her look bad so I had to be punished. Same with my sister.

She used to bam on the door like purposefully to turn off light or turn down tv. or to say she could hear me talking on the phone crazy crazy spite full stuff. I think when they see you truly love them you ae in trouble.

Anytime she is not up when I get down I think this is it. For a long time. I dread it because I believe this is going to be a very volatile period for me and that I will end up blowing up on my sister and nephew and anybody else who act like they want some.. I am just so filled with resentment and anger. I pray it helps actually keeps me in a good place but not for long.

Now, my issues is this sweet, thoughtful person, not throughly though but who is my mother. This is lasting too long. Lol. Im waiting for the switch to fflip. Plus she is a gemini. No offense to those of you out there but Yall know...I would put some money on that. Thats been a lifetime,, a thesis. My ,mother and sister Whew!!!! sick .

Sheri Jean my advice, is to stay on board her and keep posting and read through old post. Especially about narcisssim.

It amazes me as I read old stuff how true the post is to my life. How so many of us suffer from the same issues. That my pain is not uncomon. That the sickness in my family and my self is not just mine. Im not alone. But this narcissim is something to check out. It gave me understanding and wisdsom and tools to work with defending myself and my heart and my mind just by learning about it. I wish you the best in this journey its long and painful but can be rewarding just the same. My heart is with you. Just dont feed into the negative feelings and someone adviced me to find a lil humor in the mist of it and it works.I could write a novel and be rich on the things I could share. Guess we all could, that's why we here :)

BTW, she wasn't dead. Forgot to add that. I was glad when she got up when I called her. I just couldn't deal with it that day. I don't know if I will ever deal with it well. It is too much burden for one back.

Sherijean, you are not alone. I came to a terrible realization the other day. My mother was laying on the sofa in a way that looked like she could be dead. Instead of being grief stricken and concerned, I ducked into the kitchen a moment. The only thing I thought "Not today. I can't deal with this today." It is a shameful thing to feel, but I do dread the burden on dealing with her death and cleaning up all her affairs afterward.

I wonder if when we spend too long caregiving for a difficult parent if we lose our ability to like them or love them. We are simply doing a job like a good employee would. I envy people who have good warm family relationships.

Sherijean - I feel for you. It's truly awful having to take care of someone you don't like or love. I find it an effort to be nice to my mother too a lot of the time. I actually had to hand off a lot of the tasks I was doing for my mother because I would get sick with resentment and agitation when I had to have sustained and frequent contact with her. She always manages to do something to get under my skin whenever I'm with her, and I need plenty of time in between visits to decompress and let the feelings fade away.

This last week we were talking about what might happen if her housemate/live-in helper were to become unavailable, and mom indicated that she thought I would have to move in with her and take over. That's not going to happen, but just the fact that she expects that and would undoubtedly push for it was enough to make me agitated and anxious. So I think I know how you feel. It's very, very tough!

Jeannegibs...you struck a nerve..maybe what I'm calling guilt is really something else entirely..mom has two personalities..she can flip from nice to a spiteful judgemental critical person in a heartbeat..she scares me...and I don't like her..in fact I may not even love her..she's dangerous to me..and I feel odd admitting this ...ashamed ..and I struggle to help and be kind to her...it's so difficult...but there it is..

I hear you, freqflyer. One of the problems with eldercare is that it's such a crapshoot. My mother's parents lived into their 80's and were self-sufficient until the very end. My father's mother was bedridden for several years at the end, but she had plenty of money to hire round the clock care. My own mother was so independent; I never imagined she would one day decide to give up everything in her life to sit in a chair and be waited on by her children. I never would have guessed that that was in her plans or a possible outcome of her life. She nodded her head and said piously "It's time..." as though she was making a big sacrifice. Which she was, but we were sacrificing a whole lot more. There is a lot of resentment, at least for me. A lot more resentment than guilt in my case.

My only guilt was that I didn't learn years earlier that my parents would eventually become elderly and would need help. I felt I should have known this was coming. But my parents were pretty healthy into their 80's and into their early 90's, they use to walk 2 miles a day. Never thought they would all the sudden stop, and also give up driving.

For me it was more resentment, I wouldn't have the fun filled exciting retirement that my parents had for more than 25 years. And they never needed to take care of their own parents so they had no reference what they were doing to me.

I also resented that my parents didn't plan ahead on what they would do if they did get sidelined with their age. I am thankful that they did save for all those "rainy days" as it was storming out there. How I wished they would have used some of that money to help me out with their own care. Mom refused strangers in her house, and refused to move to Independent Living.

Oh well, at least we all can learn from our parent(s) on what to do and what not to do.

Guilt guilt and more guilt...but learning to set boundaries...I do so much for mom, but want her to use free services available..such as staples she needs from the grocery store...free rx delivery...but she still manipulates me to do it when I take her out to dinner..dr apts...I set her up with transit for hair apts...if they cancel..she expects me to take her..I tell her...change your hair apt...so she's ticked and surly..and I stand firm..but feel quilts...oh well...very demanding

Thank God I can truly say I did not have guilt when my Journey as Carer to my dear Mother came to a sudden end. I wanted to Care for my Mom and I did not feel pressurised into it. How ever I will never forget how tough and demanding on One Self being a full time 24/7 Carer really is. Alzheimers is such a horrible disease of the brain. I did resent some Family members for a time as I got no relief but You just Soldier on as You have no other choice. I never moaned or wined, I just got on with it...same as all of You Carers. Sadly the great reward comes at the end when that beautiful Person Who You Loved and Cared has gone to Heaven, and You feel a gladness in Your Heart and are so over Joyed that We shared the Journey with the One We loved. Sometimer ditto. I had the same experience. Friends disappeared like mist and for the first time in my Life I felt so abandoned and alone. I put this down to Their inability in dealing with alzheimers. People haven't a clue how to react or deal with it, when all Thek need do is just be Themselves. Yes I agree this is Our calling, the drill We must plough, I guess We were destined to be Carers. Any how I'm so glad I did Care for Mom at home in Her own home where She felt such great contentment and peace.

That's an interesting point KW. When we make choices we may second guess or feel regret at having to abandon the other option, but guilt can come into play when our decisions affect other people. Often there are no perfect choices, emotionally we have to weigh the good and the bad and decide what it is that we can live with, and logically decide what makes the most sense in the long term.

My guilt : Living and working and thriving as a single 50+ in California while my parents are in a nursing facility in Ohio. I have 3 brothers who are in Ohio, 2 of which are within 30 mins of the facility my mom(dementia) and dad (weak lungs/ etc) are. They are both 92 years old. Our family never had any type of strife or drama that estranged us. It's just that I started wandering with work and found the California outdoors to be very compelling. I've returned about 3x a year for last 2 years since they declined and had to enter the facility. I've assisted as I am able and am very appreciative of my brothers who did a lot of work to locate a really nice place and be able to place them in separate rooms. I have many days when i wonder- "shouldn't i be there ? closer ? Visiting every other day? Holding my mom who i can't communicate with in phone anymore due to now hearing issues? ". Am I being selfish? What's really important in life? What about duty? What about love? Respect? " is my career and etc here more important? I onew this day would come when i left Cleveland in 1992 for work reasons but I was only a few states away then. A half day drive. Out here I'm really separated. Wild West. I'm in a govt job with a pension and health care that improve with time. And im 15.5 years into that. 20years is my minimum goal for working for the state. But / is that more important than the people who raised me? When I visit now it's often 2 weeks and combined with business of shutting down their house they moved out of and buying them clothes or special foods and stuff. But ? Does it matter? My father is unhappy there- he's still mentally pretty competent and he's bored - there's not a lot of people able to talk or play cards. He and she always isolated themselves anyways so I kinda don't get what the difference is- he misses having his own "castle" but he's unable to keep a castle anymore. The improvements in his care allow him to feel this angst. He's cleaner, eating better and safer- and interacting with people (mainly staffers) but .. anyways- that's my guilt. Being away when I am capable of being there - I would just have to restart a life back there- and ? People all say it's foolish- but? Is it. Am I wanting to be dramatic or a martyr?

I had no guilt taking care of my husband. I did have regrets. I regretted that we did not do many of the things that we said we would do. I had sorrow. sorrow that his children were not closer. knowing that what I had to do for him would have killed him, he would not have wanted to live the way he was. He had always been a vital energetic person with a "can do " attitude.I had frustration.The most frustrating thing was finding caregivers to help me. Good, honest, caring people. the last 5 months I had 2 that were AMAZING. I am sorry I did not "discover" this way to find a caregiver sooner.

If I have any guilt it is now. I am busy, maybe too busy. Is this a way for me to not think about what I have lost or is it a way to make up for all the time that I cold not get out and do things. but guilt while I was taking care of him...NO. I could honestly go to bed at night knowing that I did the best that I could for that day. We guilt ourselves over things we can not control. You can not feel guilty if you place your loved one in Memory Care, Assisted Living, Nursing Home or anyplace. We all have the feeling that "I can take better care of....than anyone else" Well we have to get over that. If it comes to a point where for safety, yours or theirs, when you are so exhausted that you can't think straight, when they become too difficult to manage placing someone is doing the best and right thing for them and you. You can then become the loving daughter, son, wife, husband that you want to be and your roll as a caregiver steps back. You will always be an advocate but your roll changes.

I think the biggest guilt-inducer for me was having to place mom in a nursing home. I felt horrible. The first time she was in just for a rehab stay after a hospital stay, she called me every day, sometimes several times a day, sobbing, terrified and saying she was going to go crazy in there and would I please get her out and bring her home. It was awful. After she had to go in and stay permanently, she seemed resigned to the idea, but was very depressed for the rest of her life. There wasn't much laughter or happiness. She was just never herself again.

That is a tough one to answer as there are sooo many emotions like others have pointed out. I've been caring for my paralyzed spouse for 10 years now and it's still hard to manage the guilt, anger, frustration etc etc....The emotions can definitely get the better of you at times and it seems the best solution is to mentally detach your self as best you can. Problem than is your loved one becomes more of a patient which can complicate the relationship as well. I have found that since I know my limits more than anyone it is my job to decide when to detach and go in robot mode. For me this is better than doing or saying something I regret later. My wife is the one with the hardest life to live and I hate my self for doing anything that makes her feel like a burden. Every event passes and so does the emotion. Sorry but no easy answer here but give yourself credit for knowing you are the best person to take care of your loved one and get comfort there.

After dealing with "Cognitive Impairment/Dementia" for 7 yrs now, I no longer feel guilt because I realize that the disease is the culprit not my mother!i feel frustration,sadness,pain for her,regret because sometimes I don't have all the answers.

quiltinrealtor, I understand what you are saying. When my mother lived in an apartment and was getting less able to take care of things, we arranged a needs assessment for her and two of my sisters attended that interview. Mom had a hard time admitting she needed help. She'd say "Yes, I can get my own meals." And a daughter would say, "Yes you can. But you can only use the microwave and you don't always have well-rounded meals. Plus it is getting harder for you to carry food across the room." She would also claim she didn't need help because she already had help. "Oh, I don't need help with the laundry/housekeeping/whatever because my daughters take care of that." And one of the daughters spoke up and said, "Mom we will always keep coming. But when we are here we want to play scrabble with you, or cards, or just sit and talk. We don't want to spend our time with you scrubbing toilets."

In a situation like that you either feel guilty about not spending enough one-on-one time with your loved one, or you feel guilty playing cards with them when you can see how dirty the carpet is.

My mother was eligible for (and got) Meals On Wheels, and housecleaning/laundry help. There was still an odd job or two to do while we were there, but this did give us more meaningful time with Mom. (And no guilt.)

Guilt-hmm that is a dynamite question. My guilt is when people talk to me about my mother and the problems we encounter and then people will say " honey you are doing a great job and you are wonderful to care for you mother". Then they say "you need to pray about it" and I honestly don't know what I'm suppose to pray about. I then feel guilty about "what am I praying for"?

I agree completely with Jeannegibbs and mom2mom. Zero guilt. From the very beginning I knew this would be Mother and My last journey together and I set out to make it as fun and joyful as possible. Oh I know it is terrible trying at times and it would try You, but I counted up to 20 very slowly and by the time I got to 16 it was gone from My mind, and forgotten. We must keep reminding Ourselves that Our Elders are very vulnerable. They do not want to be dependant on Us, as They would prefer to be able to do for Themselves, but this is not possible due to age related illnesses. Think back not too long ago, Our Mothers were doing all this for Us willingly and with love, now We must Care for Our Parents.

I felt a tremendous amount of anger that my late mother had caused me to have to leave my home and move in with her, where she DEMANDED to live alone in her own home 400 miles away!!!! My family and I had tried to do some alternative measures as to where she would live 8 years prior! She said no to it all! She said "I'm so glad that I live in my own home." My response was "well, I am NOT because now you have lost the ability to choose" and she was not at all happy that I moved in with her for the last part of her life. She made me angry when I shouldn't have been. On a side note, my late mother kept in contact with a pedophile uncle of mine, who had abused me. I told her what he had done to me (in no uncertain terms) and she still communicated with the man until his death many years after the event. She said "why didn't you tell me" 100 times over!!!!!!!!!! I said "mother, I told you." It fell on deaf ears. I faulted my mother for that. Why didn't she protect her own daughter (me) by chewing this man out verbally, but instead her brother-in-law (the pedophile) was her friend?!!!!!!!!!!!

I choose to keep my mother in her own house. I would go over every morning and get her up and ready for her day, which consisted of her doing crossword puzzles. I always felt guilty because I never had time to sit and chat with her. I was too busy cleaning, giving her showers and setting up snacks for her during the day. I sometimes think she thought I was the housekeeper. She did have dementia.

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